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View Full Version : New to site~~chronic brain fog, fatigue & pain.



betsyjane
08-17-2007, 11:11 AM
Hi Everyone. I've had Lupus for about 5 years, and other than an occasional brief flare up, I'm dealing with the chronic leftovers.... I want to badly to feel normal at least for awhile. But I'm always dealing with fatigue, brain fog and pain, and that's with my Lupus under control. It's frustrating. I don't make commitments anymore because I don't know if I'll be able to keep them. I'm boring and I'm bored. I'm blessed to have a supportive family.

Oluwa
08-17-2007, 05:17 PM
Me too.

Ditto,
Oluwa

Saysusie
08-21-2007, 07:41 AM
Well, you will never be boring to us as we all have had to deal with the brain fog, constant pain and chronic fatigue. It is pretty much a part of our daily lives. It never fails that, when you get one symptom under control, another one crops up. Something, somewhere is always hurting and you don't seem to be able to form a comprehensive thought, no matter how hard you try. And, the memory???? That has become a joke! What memory?? I just look at my family nowadays and say "OGI4GOT"...my memory motto :D
We are happy that you've joined us and you will find that we all understand what you are dealing with. Welcome to our family!

Peace and Blessings
Saysusie

IloveHistory
08-22-2007, 10:13 AM
Hi BetsyJane!

Welcome to the Forum! :D I'm glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well and God bless! :)

betsyjane
08-22-2007, 11:59 AM
Thanks for the great welcome! Is there anything in particular that you've found that helps with the fatigue? the brain fog?

IloveHistory
08-23-2007, 06:04 AM
Hi BetsyJane!

It's only a pleasure! :)

Well, I find that high potency Vitamin B Complexes work quite well in helping with the fatigue. Also, tonics tend to work quite well. You'll most likely find these in your local pharmacy. Getting adequate rest is also VERY important! The fatigue drives me crazy! I am almost seventeen and sometimes, I am SO tired that I cannot even get up for school! :cry: Eating a healthy and balanced diet is also very important. One should also make sure that medications aren't making the problem worse. Sometimes, you can change the time you take the medicine, which helps, but you must consult with your doctor about this.

As for brain fog, Gingko Biloba is supposed to be really good for memory, but I can't take it because I have Temporal Lobe Epilepsy. :( Brain fog is pretty hard to deal with, but again, adequate rest and a well-balanced diet are very important!

I sincerely hope that this helps!

Keep well and God bless! :)

betsyjane
08-23-2007, 09:07 AM
You're a wise 17 year old. Sorry you have to deal with lupus at your age. I also find that B Complex helps, but only sometimes. I'm having trouble getting rest. Hard to sleep when things hurt. Oddly, though, I used to have really bad restless leg syndrome, and it went away completely when I quit drinking Diet Coke. Everything's a trade off, isn't it? I needed the caffeine, but it's nice to have calm legs.

IloveHistory
08-23-2007, 12:12 PM
Hi BetsyJane!

Thanks very much! :oops:

Caffeine is never good for one, but that connection is very interesting. I'm very glad to hear that the R.L.S. has gone away; I have read about how annoying that is for many people.

I cannot drink caffeine because I have Dysautonomia (failure of the autonomic nervous system) with a Tachycardia (heartbeat which is too rapid) and caffeine drives my heart crazy! :crazyeyes: I get such a severe Tachycardia that I usually pass out! :shock: Needless to say, my Paediatric Cardiologist has banned me from EVER drinking caffeine! :lol:

Do you have Fibromyalgia?

My Psychiatrist (I have Asperger's Syndrome and Obsessive-Compulsive Disorder) prescribed Clobazam (generic name) for me because I was suffering from pretty bad insomnia and it really helps me to sleep! :sleeping: Luckily, it really helps my Epilepsy too (it's also an anti-epileptic drug)! :) Perhaps you can ask your doctor if he can prescribe you a mild tranquilizer or sleeping pill to help you sleep at night?

I hope that this helps! :)

Keep well and God bless! :)

betsyjane
08-23-2007, 03:58 PM
That's a load of diagnoses for one so young! Well, I'll say this...You certainly show no signs of Aspergers in your very social and empathic writing.

I appreciate the idea about a sleeping pill. I go back and forth on that. Sometimes I get so sick of taking pills I just don't want to take anything that isn't a life and death matter. And sometimes I take a pill. I also have to grind pills up, and I get sick of doing that too. So bitter. The best thing I've found is to chew up my chewable multivitamin aqfter I take my powdered pills... Takes most of the taste away.

IloveHistory
08-24-2007, 01:45 PM
Hi BetsyJane!

Thanks very much! :) 'Writing' is supposed to be one of the things that my Asperger's makes me 'good' at; I have a terrible obsession with language and grammar! :lol: If you met me, though, believe me, you'd see the Asperger's! I only understand the facial expressions 'happy', 'sad' and 'angry'. :( I have VERY severe sensory issues, which is awkward, for other people as well as for me... :( I do O.T. though, as well as Physio.

I totally understand feeling like one is taking WAY too many pills! :roll: Do you mind me asking which meds you are on?

Do you have Fibromyalgia?

Keep well and God bless! :)

betsyjane
08-24-2007, 03:34 PM
Do you plan to go on with your writing as part of a career?

They keep testing me for fibro, and I don't have it.

My mainstay is placquenil. When I have a flare up, I go on Prednisone for awhile and am not happy about it because I also have osteoporosis and don't want to take things that weaken my bones! I've been prescribed a wide variety of NSAIDs, muscle relaxers and sleeping pills, and use as few as i can get away with. At one time I was on 16 different meds, so now is better than then.

I have several other diagnoses, unrelated, and take meds for them too, and am on a calcium pill, a B complex, a multivitamin and glucosamine/chondroitin. STretching feels great so I recently joined a Tai Chi class....I do that, forgetting that I never know until the last minute if I can keep a commitment...so now I've missed as many classes as I've made.

I gain horrible amounts of weight with prednisone. I finally got fed up with trying to fight it unsuccessfully and had lap band surgery last November. Consequently, I have to crush my pills before I take them, or take liquids or chewables. The good news from the lap band surgery is that I no longer test as diabetic, and my osteoporosis is reversing. Nice successes.

My frustration is that now when I go to my rheumatologist, she seems to be out of ideas, and she says I need to adjust to the fatigue, pain, and brain fog. I suppose I have, but I'd certainly rather not have it.

IloveHistory
09-08-2007, 12:03 PM
Hi BetsyJane!

I apologise for the late reply, but I have been very sick lately... :(

Well, I actually want to be a Paediatric Neurosurgeon and Paediatric Neurologist, but I do want to write medical texts. :)

How are you feeling?

Keep well and God bless! :)